The Foundation will fund four new research projects from the Spring 2024 cycle of its Making a Difference in Real-World Bioethics Dilemmas grant program.
The Making a Difference program funds bioethics research projects that seek to resolve current challenges in health care, policy, and research. Grants are awarded twice yearly. Since 2013, the Foundation has funded more than 100 Making a Difference grants supporting bioethics research on a wide array of issues including aid-in-dying, deception in medical contexts, discrimination in health care, and responses to the opioid epidemic, among others.
A New Era in Alzheimer’s Disease: Examining the Ethics of Anti-Amyloid Treatment
Justin Clapp, PhD (University of Pennsylvania)
Abstract: Anti-amyloid treatment for Alzheimer’s disease has recently entered clinical use. The ability of anti-amyloid drugs to slow the progression of dementia is unprecedented. However, it is unknown how patients and their caregivers value a prolonged course of cognitive impairment and how they weigh its significance against the burdens posed by anti-amyloid treatment. Prof. Clapp and his team will interview and observe patients, caregivers, and clinicians as they make decisions about anti-amyloid treatment and interpret its effects. They will seek to use their findings to advance the ethical usage of anti-amyloid drugs.
Moving Away from Race-Ethnicity Based Clinical Care of Early Female Puberty Towards Race and Ethnicity Conscious Puberty Justice
Camilia Kamoun, MD (University of North Carolina)
Abstract: Clinical care of early female puberty is troubled by unsound race and ethnicity based guidance, which is compounded by inadequately addressed sex-related psychosocial health outcomes. Given the limited empiric data on race and ethnicity based differences in clinical care of early female puberty, this project aims to first conduct quantitative and qualitative research to gather the necessary empiric data to then generate a set of recommendations to advance equitable, race and ethnicity conscious, patient-informed, clinical care of early female puberty based on a new puberty justice framework.
Ethics and Effects of Individual Patient Testimonies in Public Health Decision Making
Aaron Kesselheim, MD, JD (Brigham and Women’s Hospital)
Abstract: When evidence for new drug approval is uncertain, the FDA may convene Advisory Committee meetings at which expert members review evidence, hear from patients, and vote on whether to recommend approval. There is no regulatory or ethical guidance on what role patient testimony should play in these votes or FDA decisions. By reviewing testimony and conducting interviews with patients and decisionmakers, this project will seek to analyze the experience and normative role of testimony. Dr. Kesselheim and his team plan to develop actionable recommendations for integrating patient voices in regulatory decision-making.
Guiding Principles for Human Data Sharing and Use: Balancing Public and Scientific Values
Debra Mathews, PhD (Johns Hopkins University)
Abstract: This project aims to bring together human subject research professionals and those involved in responsible data management from leading research universities with bioethics scholars, Indigenous scholars, and community members of IRBs to develop a set of principles and an implementation framework to justify and guide institutions in responding to data sharing requirements in a way that respects public values and interests.
